COVID-19 health and social care access for autistic people: A European policy review

Oakley, B. and Tillman, J. and Ruigrok, A. and Baranger, A. and Takow, C. and Charman, T. and Jones, Emily J.H. and Cusack, J. and Doherty, M. and Violland, P. and Agnieszka, W. and Simonoff, E. and Buitelaar, J. and Gallagher, L. and Murphy, D. (2021) COVID-19 health and social care access for autistic people: A European policy review. BMJ Open 2021 (11), ISSN 2044-6055.

Abstract

Background: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups,including autistic people, may be excluded from services. Methods: We reviewed policies from 15 European member states, published March-July 2020,pertaining to: 1) access to COVID-19 tests; 2) provisions for treatment, hospitalisation and intensive careunits(ICU); and 3) changes to standard health and social care. In parallel, we analysed surveydata onthelived experiences of 1,301 autistic people and caregivers. Results: Autistic peopleexperienced significant barriers accessing COVID-19services. First, despite being at elevated risk for severe illness due to co-occurring health conditions, there was a lack of accessibility ofCOVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment serviceswere reported to be inaccessible -predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly)resultedin discriminatory exclusion from lifesaving treatments. Last, interruptions to standard health and social care left over 70% of autistic people without everyday support. Conclusions: The COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, likely contributing to disproportionate increases in morbidity and mortality,mental health/behavioural difficulties and reduced qualityoflife. Current policies and guidelines regarding the accessibility of COVID-19 services require urgent update to prevent the widespread exclusion of autistic peoplefrom services, which represents a violation of international human rights law.

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